: parental perspectives Parents points of view
Introduction In this booklet, we summarise the views of parents of children with cochlear implants. These parents completed a lengthy questionnaire about their experiences and feelings before and after the implant. We use the comments they made about the decision to have the implant and what happened afterwards. Most information about cochlear implants is written by professionals and deals with medical issues, the post-surgery period and the effect the implant has on the child s hearing. This booklet will discuss from the parents point of view: Deciding to have a cochlear implant Communication and language development Sign Language Education Family life The right decision? Who contributed to this booklet? 101 families completed questionnaires when their children were aged between four and 15 years old and they had had their implants for three years. These families were the first to receive cochlear implants from the Nottingham Cochlear Implant Programme, which was the first centre to implant children in the UK. The questionnaire was supported by a grant from RNID and is available to view on the Ear Foundation s website, www.earfoundation.org.uk. It provides a series of statements with which parents could agree or disagree to a greater or lesser extent. The statements were chosen from issues that parents themselves considered important. Details about the development of the questionnaire and the families that took part are given at the end of this booklet.
Deciding to have a cochlear implant The operation itself was probably the only thing that did worry me because they said there was a risk with any operation, facial operations and so on, so that risk was real and it did scare us a bit. We thought at that time that he would be refused because he had too much hearing or there was too much damage in his ears so they couldn t put the actual implant in. So yes, there were a lot of concerns at that time. Going ahead with a cochlear implant for your child is one of the most important decisions you can make as a parent. Research shows that children who are born profoundly deaf need to be implanted early for the greatest benefit. It is not clear how early this should be, but the decision to implant is not one that should be delayed until the child can make up its own mind. Oh yes, huge worries. Were we doing the right thing? What is important to parents at this time? 97% said that before proceeding with the implantation, parents should obtain as much information and advice as possible. 90% agreed that only experienced teams should carry out the operation. 54% of parents agreed that making the decision to go ahead with implantation was the most difficult part of the whole process. 80% felt that waiting for the results of assessments prior to implantation was a difficult time. This suggests that the uncertainty in the time leading up to the decision could be very stressful. During this time parents found it useful to meet other parents of implanted children to learn from their experiences.
Deciding to have a cochlear implant Research read all you can and meet as many implanted children and their parents as you can Ask questions, never feel that they are silly or irrelevant. Talk to other parents try not to have too high an expectation. Be as patient as possible. Why choose an implant? What made parents feel that the implant was so important for their child? 74% of parents agreed that their child had received no benefit from hearing aids prior to the operation. Social factors 60% of parents felt their child was socially isolated before their implant. 84% said they chose the implant so their child would be part of hearing world. [I wanted him to] make the best of himself in a hearing world, for whether we like it or not, that is what it is. Unfortunately it is still a very hearing orientated world, so we have to give our children all the help we can. 95% of parents wanted their child to be able to hear traffic sounds for safety reasons. The majority of parents also expected their child to speak after the operation.
After the implant For a long time I thought it wasn t going to work actually because he didn t do anything at all. Then all of a sudden he had this growth spurt and it came all at once, loads and loads it was marvellous. 58% of families felt that progress during the first few months seems very slow. 94% agreed that parents must be patient as the positive benefits of the implant will take time to show. The implanted child can take some time to be able to make good use of the implant, so the hoped for results may seem slow to emerge. Have a lot of patience, it doesn t give children a sudden hearing capability. Don t expect too much too quickly. It seems important that everything possible needs to be done to prepare parents for this period, where they have to wait for benefits to become apparent. Language and communication His wording has become more understandable, you can really understand what he s trying to say. 62% of parents expected their child to learn to talk after they had their implant 89% of parents agreed that their child s use of spoken language had developed greatly. One of the main reasons that parents decide their child will have an implant is the hope it will help the development of their language and communication. This does not necessarily mean that their child had developed speech that was easy to understand. 86% felt their child was now talkative and started to engage others in conversation. 79% of children could now chat in situations where they could not see their parents face, such as in the dark, or in the car.
After the implant 32% of parents said their child s speech was still a cause for concern three years after the operation. [He is] more involved with the family and day to day conversations around the dinner table where before he was possibly left out. It was extremely difficult to make him aware of what the conversation was about. Sign language and implantation To be honest, he s more comfortable with signing, I think he can understand signing as a language better than he can understand English as a language and he finds it easier to sign than to speak I think slowly he s becoming more oral which I am glad about because none of my family signs and he communicates quite well with them all. 72% agreed that signing support was helpful for a considerable time after implant. 82% of parents felt that they should have a choice in the use of sign language at school. The use of sign language with deaf children has always been the focus of much discussion. It is a particularly controversial issue for children with cochlear implants as one of the main reasons for parents choosing an implant for their child is that it will improve the development of their spoken language. Professionals disagree about whether sign language should be used with children with implants. Some believe it helps their general communication, but others say delays the development of spoken language. Most parents found that after their child had had their implant they were less likely to use signs. 68% of parents agreed that communication is easier by speaking than by signing.
After the implant Confidence and independence He likes going to the cinema. But we don t usually assist him or anything. He just listens through his implants, which I think is quite good for his age. Language and communication were not the only reasons parents considered cochlear implants for their children. Many hoped the implant would develop their child s self-confidence and independence. 84% of parents agreed that there had been a significant improvement in their child s confidence. 62% felt their child was as independent as other children of the same age. He likes to be independent by trying to communicate with total strangers. A child s increased independence, of course, means that they are less dependent on their parents and half of the parents agreed that they now had more time to themselves. 89% of parents agreed that their child could now amuse themselves 'listening to music or watching TV or playing games. Family life 96% of parents agreed that their child was more sociable within the family due to their improved language skills and self confidence. 80% felt that their child took part in family relationships on an equal footing with other family members. Grandparents especially feel more able to treat her as a grandchild and not someone to be feared if they were unable to understand her or to make themselves understood.
After the implant She can talk to her grandparents, who are overseas, on the telephone. 78% of parents said their child shared more in family situations after the implant. Education (Most of the children were at primary school at the time of the questionnaire.) She doesn t seem to have a problem engaging in conversation or anything really. She is very much part of the class. She stayed in mainstream education until she was in the last year of juniors and then she started to drop behind, purely because of her vocabulary really. She just hadn t got enough vocabulary to carry on with the curriculum. 82% of parents were happy with their child s progress at school. 53% agreed that they were keeping up at school. This suggests that some parents either did not expect their deaf child to keep up at school, or were happy to accept a situation where their child was not fully meeting their potential, or were happy to see any progress. 20% of parents felt their child was unable to cope with mainstream school and 67% felt they could. The school situation seemed satisfactory for the majority at this time, but there were indications that a number had some concerns about the future. 52% of parents were anxious about future school placements. 99% of parents wanted to stay in regular contact with the implant centre, at school as well as at home.
After the implant The right decision? 69% of parents agreed that progress after implantation has exceeded my expectations. The majority of parents were pleased with the choice they had made about implantation. There had been significant improvements in language and communication, confidence and relationships within the family. 74% of parents felt their child s behaviour had improved since the receiving an implant. While the general impression was that implantation had been a good decision, some parents still had some doubts about whether they had done the right thing. 23% were worried that because their child had an implant, they would not be part of either the deaf or the hearing world. I worry about him not belonging to the deaf or the hearing community. I want him to actually be able to feel part of the hearing and/or deaf worlds and worry that he could be caught in the middle. 24% of parents were worried that the deaf community would reject their child because of the implant. 11% were concerned that in the future their child would blame them for the decision to go ahead with the implant. Three years after the operation, the parents still wanted continued support from the implant team. 99% of parents felt regular tuning and checking of the system were essential. 92% felt they were reliant on the implant team for technical support. 97% of parents felt that a positive attitude is a great help towards the successful use of the implant'.
Conclusion The overall feeling from families who completed the questionnaire was that the stress involved with getting a cochlear implant for their child had been worth it. Finally, the consensus was to proceed advisedly: It has to be a decision only you can make, don t let others influence you. I just feel we all have to try anything we can. Unfortunately it is a very hearing orientated world so we have to give our children all the help we can. Notes 1. 104 parents replied to this questionnaire, and 101 of the questionnaires were used. Three were excluded because of incomplete data. Parents completed the questionnaire independently three years after their child had been implanted. 2. The questionnaire was based on interviews with the parents which were used to identify the issues they felt to be important. The questionnaire devised from parental issues was independently validated by Nunes and Pretzlik, with a grant from RNID. The validated questionnaire is available to download from The Ear Foundation website (www.earfoundation.org.uk). References Archbold SM, Lutman ME, Gregory S, O Neill C, Nikolopoulos TP (2002). Parents and their deaf child: their perceptions three years after cochlear implantation. Deafness and Education International. 4(1): 12-40. O Neill C, Lutman ME, Archbold SM, Gregory S, Nikolopoulos TP (2004) Parents and their implanted child: questionnaire development to assess parental views and experiences. International Journal of Pediatric Otorhinolaryngol 68, 149-160. Nunes T, Pretzlik U, Llicak S (2005) Validation of a parent outcome questionnaire from paediatric cochlear implantation. Journal of Deaf Studies and Deaf Education. With thanks to the families and staff of The Nottingham Cochlear Implant Programme who gathered the information. * Taken from www.ihr.mrc.ac.uk
We re RNID, the charity working to change the world for the UK s 9 million deaf and hard of hearing people. There are a number of ways to find out more www.rnid.org.uk Information line Telephone 0808 808 0123 Textphone 0808 808 9000 Or write to us informationline@rnid.org.uk 19-23 Featherstone Street London EC1Y 8SL Fax 020 7296 8199 In partnership with: The Ear Foundation 2281/0306 Registered Charity No. 207720 Photography Photodisc, Stockbyte, Digital Vision, Philip Meech, Crispin Hughes, Shaun Bloodworth www.theearfoundation.org.uk